Welcome back to Left on Longwood! Since I last posted, the left turn has taken me all of the way to the Left Coast. Much news: in addition to completing my fellowship and starting my new position as pediatric rheumatologist at Children’s Hospital of Orange County in Southern California, I’m pleased to welcome rheum school. Rheum school is a blog for students of pediatric rheumatology (residents, fellows, attendings etc) that grew out of conversations with Mindy Lo and Jonathan Hausmann, friends and colleagues in Boston. Rheum school is already off to a great start, including updates on the recent American College of Rheumatology meeting in DC. I’ll look forward to being a contributor. Below is my first post for rheum school: some thoughts on diagnosing pain syndromes.
I’ve been thinking quite a bit about pain syndromes lately. Perhaps you have as well? No doubt, diagnosing a pain amplification syndrome once (or four times!) a day will have that effect. As a newly minted attending pediatric rheumatologist, I would imagine that this recent experience is not unusual. As I work my way through our program’s back log of heavily-triaged “non-urgent” new patient referrals, I’m encountering patients with a dizzying array of symptomatology and the single unifying diagnosis that we all know well. The David Sherry RND patient education handouts are flying off the shelves as fast as I can print them.
As I prepare to knock on the exam room door of a new patient whose records fairly scream the diagnosis, I’ve been refining two pep talks: one for the patients/families and one for me. I’ll do my best to share the latter one with you here.
Diagnosing Pain Syndromes Requires Clinical Acumen
By the time they make their way to our clinics or inpatient floors, patients with pain syndromes have seen many doctors and have been subjected to extensive testing. And yet they remain undiagnosed! Other physicians have heard the story, examined the patient, ordered work-ups and have been unable to make a diagnosis. You are about to do what they lacked the clinical acumen (patience or courage) to do: unravel a medical mystery as challenging as that of a rare autoimmune or inflammatory disease.
The referral packet (look at it, bulging there on the table!) is bloated with third and fourth-order imaging, laboratory and diagnostic procedures done to rule out this-or-that. It takes a great deal of medical knowledge, judgment and time to read through that intimidating and confused pile of reports and interpret so much varied testing accurately, always with the clinical context in mind. Every one of these patients teaches us important lessons in decision analysis, or what I like to call test logic. Their stories remind us that ordering tests in the inappropriate clinical context with low pre-test index of suspicion has little diagnostic value and the darndest consequences.
I have been trying to bring out this concept for the residents and fellows who have accompanied me on my recent forays into pain syndrome diagnosis. Of course, the ANA and most tests in medicine have lousy performance when sent in the wrong clinical context. The less experienced clinicians who are spending time with you don’t understand this and need to learn it from you. Every physician needs to learn how to select testing based on the context, consider potential results and look ahead to how that information will help lead to a diagnosis and treatment recommendation. Absolutely, this is an opportunity to teach test logic, to reinforce the concepts of sensitivity, specificity, predictive value. These physicians-in-training are extremely fortunate to be able to learn this with you today. The experience of seeing a pain syndrome patient and hearing about their medical testing history might just give life to those abstract concepts and make the lesson stick.
Diagnosing Pain Syndromes Requires Confidence
Telling a family that other physicians have diagnosed with various frightening diseases that they do not have a terrible disease takes enormous confidence. Since so many possible alternate diagnoses have been considered, the diagnoser of a pain syndrome, in effect, passes judgment over the other diagnoses, dismissing them one by one. The diagnoser puts all of the data into context, provides a radically new explicative pathophysiology and confidently accounts for the etiology of all of the symptoms. Confidence. This is the kind of confidence that comes from Jedi-knight level diagnostic, perceptive and interpersonal skills. Ever notice that our most revered senior colleagues, the people that make us well up with pride to be pediatric rheumatologists when we think of them, are so skilled at diagnosing pain syndromes? Not coincidence.
Diagnosing Pain Syndromes Requires Courage
In the most challenging pain syndrome cases (you’ve been there), many layers of confusion, fear and frustration self-reinforce an alternate reality. When we meet with these families and learn of their stories, we feel the strong pull of that vortex of confusion. We can become disoriented, the horizon can be lost. Our courage is tested.
The easy out, the option chosen by many of our colleagues in other disciplines, would be to send “our tests,” rule out “our diseases” and then pass the patient/family on to the next specialist to continue the cycle. Most doctors do this, but not pediatric rheumatologists. We should be enormously proud that as pediatric rheumatologists we do not engage in this kind of can-kicking. Instead, we speak truth to the confusion, at times, even to outright lies. This requires conviction that it is worth the time and the energy to actually address the patient’s problems in front of you rather than cowardly elect to punt. This requires hope that our recommendations will help people to get better, prevent disrupted lives from becoming ruined ones and stop irresponsible consumption of health care resources. This requires soulful listening, compassion and humor. This requires courage.
Hone skills. Build confidence. Take courage. Go forth and diagnose pain syndromes!